Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research

Ghirotto, Luca; Busani, Elena; Salvati, Michela; Marco, Valeria Di; Caldarelli, Valeria; Artioli, Giovanna

doi:10.1017/s1478951518000172

Cited by 17 publications

(21 citation statements)

References 34 publications

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“…A centralized data tracking sheet was created, completed, and verified by both researchers. The data sheet included 15 categories for analysis: (1) article citation, (2) publication year, (3) journal name, (4) profession of lead author, (5) study type, (6) evidence appraisal rating, (7) age of study population (i.e., pediatric or adult), (8) participant illness type, (9) country of origin, (10) name of legacy-oriented intervention studied, (11) stated definition of "legacy" if given, (12) study purpose, (13) primary outcome studied, (14) methods and participants, and (15) study findings. Individual article quality was appraised using GRADE guidelines 21 for quantitative studies, and the Johns Hopkins Evidence Level and Quality Guide 22 for mixed methods, qualitative, and review articles.…”

Section: Database Search Termsmentioning

confidence: 99%

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Boles

Jones

2021

Palliat Med

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Background: Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. Aim: To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. Design: A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. Data sources: PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. Results: The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. Conclusions: Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice.

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Section: Database Search Termsmentioning

confidence: 99%

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Boles

Jones

2021

Palliat Med

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“…Current debates demand children and adolescents with a life-limiting condition to be part of decision-making discussions. 7,13,[43][44][45] However, these studies are usually limited to the participation of communicative and competent teenagers, and tend to disregard the fact that the majority of paediatric palliative care patients have severe cognitive impairments or are too young to participate in decision-making discussions. Our findings highlight the potential for conflicts between parents and professionals about the child's best interests.…”

Section: Main Findingsmentioning

confidence: 99%

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

et al. 2020

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Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks. Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. Conclusion: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

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“…This review illustrated that child and young person perspectives are lacking. While this is not uncommon in the general population of children in palliative care and may relate to their illness (Ghirotto et al., 2019), other issues may be at play. Weaver et al.…”

Section: Discussionmentioning

confidence: 99%

A systematic review exploring palliative care for families who are forced migrants

Clancy

Taylor

Bradbury‐Jones

et al. 2020

Journal of Advanced Nursing

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Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research

Cited by 17 publications

References 34 publications

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

A systematic review exploring palliative care for families who are forced migrants

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